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Monday, July 20, 2015

Visit with Dr. Richardson

It was with some relief that I got my next month's supply of Revlimid on Friday.  That means I can continue the maintenance therapy while we are in Peru. Yay!  When I went to the Farber today for my monthly checkup, Kristen, the new transplant nurse, credited me with pointing out to them that they didn't have their ducks lined up for this new follow on protocol.  Things might have worked out anyway, but it doesn't hurt to be proactive.

I'm pleased to say that my numbers looked really good again today, so the beat goes on.

I finally had a chance to meet up with Paul Richardson again. It's OK that I haven't seen him for a while, as it means I'm doing fine. It was really great to meet with him. He greeted me like a long-lost friend, which was really nice. By the way, he was only a little more than an hour late this time, which I think is s new record!  We chatted for a while about politics and the sad state of the world, including their highly-touted new software system, which everybody I've talked to so far says is awful. When he finally got around to my medical stuff, he was very pleased with my numbers and my continued remission.  Because I'm doing so well, I can now reduce my Zometa infusions from every 2 months to every 3 months.  The less often I get that IV needle, the better.

I was concerned about new data showing that while Revlimid shows great result s as a maintenance therapy, there is an enhanced risk of secondary cancers (11%), which seems quite high. Paul reassured me that much of this risk is actually due to the chemotherapy drug melphalin, which I received during my stem cell transplant, but I only received one dose, while many in the database had two or more. Besides, even accounting for that risk, the survival benefits of Rev far outweigh the risks. Also, I am on the minimum possible dose of Rev, which reduces my risk. Nevertheless, I still plan to see my dermatologist next month for my 6 month checkup.

I asked him about what he would recommend if I were to relapse soon. As I suspected, he would probably put me on Pomalyst (since I would have become refractory to Revlimid), coupled with Velcade and dex.  Since there is an ongoing clinical trial, the Pom would be free.  That wouldn't suck.

I also asked him about Kyprolis as an alternative to Velcade, since recent clinical trials have been so positive. He's not so keen on it, as it can have some very serious side effects. Two of his his patients have died from heart problems he thinks we're directly related to the Kyprolis. Velcade has side effects too, mostly peripheral neuropathy.  As he said, neuropathy is uncomfortable, but nobody has died from it. OK then.  Next subject.

I told Paul about my decision to pass up the Yellow Fever shot before going to Peru. He thought that was fine. I'll just plan to swathe myself in Deet while in the rain forest.

The Multiple Myeloma Research Foundation (MMRF) is sponsoring a free seminar next month in Boston on August 22. Dr. Richardson is hosting it. I told him I'd be there and he told me to bring as many family and friends as I could. If you are interested, let me know.

We leave for Peru tomorrow. We're really looking forward to a great trip  It will be awesome to see Holly and Ryan again. Maybe I'll have a picture or two for my next blog post.

Monday, July 13, 2015


Today, July 13, marks the 4th anniversary of my diagnosis with Multiple Myeloma.  It has been an eventful journey since then.  I'm still amazed that it was my initials, W.O., that allowed me to enlist in the Phase I clinical trial for MLN9708.  If you are new to this blog, I'll repeat the story.  the Farber had just filled its allotted slot in this clinical trial, and the next patient was to be selected from another participating cancer center.  However, the day before my appointment, the patient from the Farber backed out.  Normally, they wouldn't be able to nominate another candidate, but the only information they had provided about that patient were his initials:  W.O.  Since I have the same initials, they were able to substitute me into his slot.  How do you figure that?  Hello?

That turned out to be a serendipitous coincidence.  At that time, the oral proteasome inhibitor, MLN9708, was in early stage Phase 1 clinical trials as a possible oral substitute for the infused proteasome inhibitor, Velcade, which has become part of the accepted standard of care for MM.  I responded remarkable well to the MLN9708, achieving a stringent Complete Response after 7 cycles.  It worked amazingly well for me!  Since then, MLN9708 has fared very well in subsequent trials and may receive FDA approval as an alternative for Velcade in the next few months. 

Next, I became eligible to enroll in a transplant clinical trial which had three arms, each including one or two autologous stem cell transplants (ASCT).  I was fortunate enough to get selected for the arm that Dr. Richardson felt was the best of the 3:  a single ASCT, followed by 3 consolidation cycles with Velcade/Revlimid/dexamethasone, and then followed up by 3 years of Revlimid maintenance. He felt that this was the best way to hit MM the hardest and knock it down for the longest time.

Here I am at the end of the three years. I'm thrilled to say that I am still doing great!  Originally, this trial was supposed to end after 36 months, in which case, the plan was that I would go off the maintenance therapy this month.  However, this trial has just been extended for another 3 years, so I should continue to get Revlimid maintenance (free of charge!) as long as I stay in remission.  Awesome!  ( I don't even want to think about how much it would cost if I had to pay for it!)

I can't tell you how lucky I feel to be in this situation.  The combination of being at one of the world's premier cancer centers at the Farber, finding the incomparable Dr. Richardson as my oncologist, getting the benefit of new world-class anti-MM drug treatments, and just being in the right place at the right time is overwhelming for me.  I am so grateful for all of it.

On Tuesday, July 21, we head off to Peru for two weeks to visit our daughter, Holly, and her fiance, Ryan.  We are very excited about this trip!  We haven't seen Holly since she went down there in February to teach at a Montessori pre-school.  This should be so awesome!  We plan to visit Cusco and Machu Picchu, as well as Puerto Maldonado in the rain forest.  We will also spend a few days at their apartment in Huanchaco (near Trujillo) on the Pacific ocean.

We both have gotten all our shots--except one.  I haven't gotten the yellow fever shot (not required for Peru), and I am now thinking to forgo that, based on my research on how few unvaccinated tourists have gotten the disease in South America.  Not to mention that when I went to the clinic the last time, the NP thought the yellow fever shot was contraindicated for me because of my age and compromised immune system.  Also, we aren't actually staying in the rain forest, but in the town of Puerto Maldonado.  We're taking plenty of Deet bug spray for ourselves and our clothes.  I don't think I want to take the chance of having a bad reaction to the shot, so I might cancel my appointment on Friday.  Any thoughts about this?

Before we leave, I am scheduled to see Paul Richardson next Monday.  I'm really looking forward to seeing him, since it has been a long time since my last appointment.  That's actually a good thing, since I have been doing so well for so long.  I do have a few questions for him.  If I have a chance, I'll update my blog before we leave for Peru.  If not, adios amigos.

Monday, July 6, 2015

Vacation time

Over the last couple of weeks, we have taken some time to chill.  Two weeks ago we went back to one of our favorite places in the world, the Newagen Seaside Inn in Boothbay Harbor Maine.  We went with two of our friends. Barbara and Andy, and had a wonderful, relaxing time on the beautiful coast of Maine.  The weather was great and we took a delightful schooner sail boat ride around the harbor.  A lobster dinner was a must!  We used to go there every year, but ever since we moved onto the river in West Newbury, we stopped going.  But now that we have moved, revisiting the Newagen Inn was a real treat.

Logan and Pam on the ATV
This past weekend, we went to the farm (our summer place) in upstate Champlain, NY.  Jeff & Christine, and Brian, Pam, & Logan were all there.  The weather was perfect and we had a great time, as usual.  Logan seems to enjoy the farm.  I hope he grows up to love it as Jeff and Brian and I have.  The house was built by my great grandfather in about 1880, so Logan is a fifth generation descendant.  It would be nice to keep the family tradition going.  Our neighbors across the road, Betty and Ed, hosted a wonderful fireworks display on the 4th.

We are supposed to head off to Peru to visit Holly and Ryan in two weeks.  We're hoping to have a wonderful time with them visiting Machu Picchu, the rain forest, and their coastal village of Huanchaco. 

One problem is that my passport expires this week, so I filed a renewal application on May 30.  I have heard nothing since then, so I am getting a bit nervous.  I know they cashed my check on June 3, so I would assume that it's being processed, but when I went on their website today, they didn't have a record of it in the system!  Yikes!  I decided to call my congressman to have him look into it, but in the meantime, after calling about a dozen times and waiting on hold for a half hour, I finally talked to a human being!  He told me that my passport was sent out in the mail today!  Hooray!

Now get this.  He gave me a tracking number for the USPS website.  This is the longest tracking number I have ever seen:  4200198500009205596900893491581302.  OK, let me ask you, why the hell do they have to have a 34-digit tracking number?  I mean seriously.  Again, WTF?  Who comes up with this shit?  Anyway, after laboriously typing it in, I got the response that it is on the way and should be here by Wednesday.  Yippee!  I guess I (we) get to go to Peru after all.

I finally got approval from the Farber to get my yellow fever shot before we go to Peru.  I have scheduled it for July 17, just before we leave.  However, I have been having second thoughts.  I went onto a website that said that there have been 4 cases of yellow fever in South America from unvaccinated tourists since 1975.  That's one every ten years.  Hello!  So why should I take the chance of an adverse reaction to the shot when the probability of getting YF is almost nil?  I may just skip this appointment!  I mean really...why does the CDC recommend getting this shot when the probability of getting YF is so low, especially since the shot itself can give you YF?  Hello again!

I'm meeting with Dr. Richardson on July 20, the day before our trip.  I have a number of questions for him, since I haven't seen him in a long time.  The Farber just installed a new computer system, which means everything is pretty well fucked up.  I have to keep on top of all my appointments, medication schedules, clinical trial paperwork, etc., but in the end, it will still probably get messed up  Oh well.  That's life.  I learned a long time ago that you have to take responsibility for your own medical care.  Even at the world-renowned Farber, you have to stay on top of things all the time.